What not to say to preemie parents - Amy's story

Last July, Amy's world was turned upside down when her daughter was born three months early. Read her story below.

Last week we heard from Andy, Dad to Eliza, this week his wife Amy writes for us:

Last July, my world was turned upside down when my daughter was born three months early. I was thrown into a world that I didn’t really know existed – the NICU. Up until it happened to me I’d never really given much thought to premature babies. Sure, I knew they existed (one of my older brothers was six weeks early) but I’d never really considered what it meant to have one. I had no idea that babies could be born so early (27 weeks), or so small (715 grams) and I certainly did not think that it would happen to me.

Eliza was born as a result of severe pre-eclampsia. She had stopped growing inside me and the only way to prevent the condition potentially killing me was to deliver the baby.

When she was born she had a grade three (out of a maximum of four) bleed on the brain. This then developed into hydrocephalus (fluid on the brain) and my poor baby had to go through two lots of brain surgery and copious numbers of ventricular taps, where a needle was inserted into her brain to have fluid drawn out. A lot of this occurred before she was even meant to have been born.

This is not how I’d imagined my pregnancy and certainly not what I’d expected my baby to go through. It is quite a shocking story to explain to people.

It’s one of those stories where some people just don’t know what to say to you, so try and think of some ‘comforting’ cliche because that’s better than saying nothing. I always smile and nod when I’m confronted with one of these comments, whilst on the inside I’m screaming.

I don’t want to make anyone feel bad or ashamed for trying to make me feel better- this post is more about educating (a professional hazard of being a teacher) and letting people know that sometimes they need to think before they speak. So I’m going to give a rundown of some of the comments I’ve been at the receiving end of.

1. “She was just so desperate to meet you.”

You could say it’s the Mummy Bear in me being over protective of my daughter but when people say this it feels like they are putting the blame on Eliza. No one should blame my daughter. She was much closer to me inside my tummy where she could be with me 24 hours a day, seven days a week. Whilst there she could hear my voice, my heartbeat, feel my warmth and get all her nourishment.

Being born early meant that she was separated from her mummy who could only hold her for a short amount of time each day. She couldn’t hear my voice 24 hours a day - instead it was the constant beeps of the machines and the voices of the nurses looking after her. She wasn’t kept warm by my body, it was the incubator that was her mechanical womb for weeks and her nourishment was pushed through a feeding tube. She didn’t choose to be born that day, she was cut from my body. I’m pretty sure if she’d had the choice she would have stayed inside me.

2. “Think of all that wonderful extra time you got to spend with her.”

Really? Wonderful? Eliza spent 11 weeks in hospital. It was the longest 11 weeks of my life. I would spend at least eight hours a day in hospital, plus the minimum half an hour journey there and back. It was not wonderful, it was exhausting and terrifying. Every day I went in dreading the news I might be confronted with, especially in the early days when we didn’t know if she would live or die.

I would trawl the Internet looking at websites that described the signs of cerebral palsy and brain damage and then spend all day watching and studying Eliza, hoping that I wouldn’t see these signs. I would go to the expressing room every four hours, or if it was quiet, pull a screen around Eliza’s incubator and express next to her bedside. All the while I wasn’t really Mummy because I wasn’t her primary carer. I wasn’t breast feeding her, I didn’t have her in a Moses basket next to my bed at night. I had to ask permission to cuddle her. Worst of all, I had to leave her in the hospital every night for 11 weeks, as I couldn’t take my baby home. So no, I didn’t really get to spend all that extra wonderful time with my daughter

3. “She’s fine now, so don’t think about what you went through or what could have happened.”

This is a difficult one. Yes, Eliza is fine now, in fact she’s more than fine, she’s perfect. But I can’t forget what happened and I constantly think about what could have happened. I nearly died and that is scary to get my head around. My daughter also nearly died and that too is terrifying.

However it’s not those things that I dwell on. It’s the loss of three months of pregnancy and everything that goes with it – a massive bump, seeing the baby move inside me, the natural labour, the breastfeeding, the being able to take my newborn baby home with me. I still grieve for all that loss. All I ever wanted was to be a mummy and experience every aspect of pregnancy that goes with it. I still struggle looking at heavily pregnant women because they’re experiencing what I didn’t.

Yes, I often look at my daughter and am bowled over with how lucky I am that she’s here and is extremely happy and healthy. I also feel huge amounts of guilt, because it was my job to keep my baby safe and help her grow inside me but my body failed us both and, as a result, Eliza has gone through so much in her short lifetime. Every time she has to have medical procedures I feel like I have failed her and not done my job as a mummy properly. So I can’t forget and I won’t forget because I feel the guilt, and because I had something stolen from me that I won’t ever get back.

4. "Do you want another?"

This is a natural thing to ask a new parent. However it’s not so straightforward for me because I’ve got more than a 50 per cent chance of it happening again. Ok, so that’s under 50 per cent chance of it not happening, but the problem with pre-eclampsia is that they don’t know what causes it.

Therefore if I do decide that I would like Eliza to be a big sister I’m still not going to have a ‘normal’ pregnancy, not just because I’ll be under constant review at the hospital but because I’ll be bricking it the whole time. I have always wanted more than one child but I don’t know if I could go through it again. There’ll be no excitement when I take that pregnancy test or when I tell my nearest and dearest because I’ll be living in fear of what has happened and what might happen again.

5. "She’s just like a normal baby."

I think that when people say this they are trying to say that she’s meeting her milestones for her corrected age. However because they’ve not been in this position, they don’t know the lingo. As far as I’m concerned my baby is not normal, because normal suggests ordinary. There is nothing ordinary about Eliza, in fact she is extraordinary. This tiny person has been through more in her short 15 months than most of us will go through in our lifetimes. She’s had blood transfusions, copious blood tests, two lots of brain surgery and, as I’ve already mentioned, many ventricular taps. So never underestimate these premature babies as normal or ordinary, because they are far from it. Eliza is most definitely my miracle baby and I live in awe of her every day.

This post has been a way for me to try and make people understand the rollercoaster of thoughts and emotions you go through when you have a premature baby. So, should you meet someone who tells you that their baby was born early and spent time in the NICU, think about what you are saying to them. Don’t try to trivialise their experiences, or brush them under the carpet. Let them know you understand that what they’ve been through is momentous and life changing. A simple “Wow that must have been quite a time for you” or a “How is your little one doing now?” is enough to let them know that you understand they’ve been to hell and back.

If you have been affected by any of the issues raised in this post, please visit our support pages, or call the Bliss helpline. If you would like to share your story with Bliss, you can email media@bliss.org.uk.